Testing negative for APS

[DebsT]

Hi I was diagnosed with APS in 2011 due to difficulties getting pregnant and since then I have been on aspirin and had yearly blood tests. My last three blood tests have been negative and I am unsure what this means? Can anyone advise?

Thanks.

[Lure2]

Hi Debs T.

So in 2011 you were tripple-positive (all three positive inkl Lupus Anticoagulant) when you were also diagnosed. Did you have high titres also all the other times? Were all three positive until this year?

The Antibodies can go up and down for some of us but still you can not say you do not have APS. The APS will never go away if you have got a correct diagnose. The antibodies may come back later on even if they are negative this time. As you are on Aspirin pehaps you have also some other symptoms.

Best wishes

[Lure2]

I looked back on your post 5 years ago. I have answered you twice there and as I understand you live in the USA and have not got a Specialist for your TIAs etc you have probably had. You write about that.

Mary F and Dave also answered you and gave you very good answers. You also write that you only tested positive for Kardiolipin but the titres were high.

So get a Specialist this time. You should probably be on an anticoagulation drug which Aspirin is not.

[Lure2 in reply to Lure2]

I see you live in England. Good for you.

[DebsT in reply to Lure2]

Yes I have a specialist and he is renowned but his specialism is lupus. When I asked him if my negatives meant it was gone, he shrugged his shoulders? Not very helpful really. My last positive test was very high 180 plus for cardiolipin but three tests since negative. He is not too interested as I have not had a stroke or blood clot. Thanks for your help xx

[HollyHeski Administrator]

Hi, Lure 2 is right, you really need to get a specialist. We are all so different and need to be on anticoagerants to get a good balance/quality of life.

[MaryF Administrator]

A lot of us go in and out of positive/negative testing, I do and it does not mean it has gone! It is all related to how many antibodies show up at the time. MaryF